Henri Sannier: “I have a rare disease, but I wage war on a daily basis”

Journal of 8 p.m. from the 2, 19/20 of the 3, presenter of the program Tout Le Sport, commentator of the Tour de France… journalist Henri Sannier had a professional life at 100 an hour. And between the bicycle, travel and grandchildren, his retirement had taken the same path until chronic polyradiculonévritis-a rare autoimmune disease which attacks peripheral nerves-net stop, a more than four years ago.

International Day of Rare Diseases: “I started to have pain then difficulty walking”

It all started in December 2020 with a severe bicycle fall … fortunately without breakage. “Despite the shock of the accident, I had nothing broken, only blues everywhere and an egg on the head”recalls the former presenter. The relief was total when his family and left, as expected, in the mountains for the holiday season.

But while bruises gradually fell, his condition has worsened. “I started to have pain, especially in the shoulder and then difficulty walking. I also felt great fatigue. I was seeing a neurologist who sent me to Amiens hospital because he suspected a neurological disease.”

Thus, in the middle of the Pandemic of COVID-19, Henri Sannier took the path of the neurology department of the establishment of the Somme for a week of exams. “What was particularly difficult during the whole of my medical journey and my hospitalization, it was above all the COVVI-19. Between the nursing staff very taken by the COVID patients and my loved ones who could not come to see me, I was very alone. To hold, I thought about everything I did in my life and to everything I still wanted to do.”

Henri Sannier: “I had lost 14 kilos, I was greenish”

At the end of the exams, the doctors announced to Henri Sannier that he was affected by a Guillain Barré syndrome, the most frequent form of inflammatory neuropathy. But the treatments and the stay at the prescribed Berck rehabilitation center provide only very limited progress. The reason? The diagnosis made is not the right one. The retired journalist was then sent to Pitié Salpêtrière to do further analyzes. These new tests made it possible to identify with confidence the disorder which reduced its movement capacities every day: it is a chronic polyradiculonevitorite.

This rare autoimmune disease is a neuropathy similar to Guillain Barré syndrome, except that it is-as its name suggests-chronic. Touching the peripheral nervous system, it causes increasing muscle weakness. “In a few months, I went from balance problems to have to use a walker and then a wheelchair. It went very quickly.”

If the diagnosis of a rare and disabling disease would have reached more than one, Henri continued to trust the future. “I am a legendary optimist. So I was never afraid. Even if at one point, I might have had to: I had lost 14 kilos, I was greenish. I admitted that I was avoiding looking in a mirror at that time.”

Chronic polyradiculonéverite: “Every 8 weeks for 3 hours, I do plasmapheresis”

Once the disease is identified with confidence, a battle plan has been established. “Every 8 weeks for 3 hours, I do a plasmapheresis. It consists in taking off my blood on one side using a special machine, extracting plasma on the other and reinjecting the blood with brand new plasma. Because in my plasma, my antibodies turn against me. This is the cause of this autoimmune disease. Today, it is much better. While I was no longer walking. “

Henri Sannier fights against chronic polyradiculonéverite … But he is not alone in his fight. He was able to count on the support of his friends, his family, and especially his wife Sylviane. “”I lived badly to lose my autonomy. I did not want to use external help. So it was my wife who managed everything. She did it in an admirable way“Said the 77 -year -old journalist.

“When you are sick, you become very demanding with the people around us. I didn’t realize everything she was doing right away, and that it was also hard for her”he admits by emphasizing the important, but not recognized role, caregivers in care paths.

Autoimmune disease: “Many gestures remain difficult”

By dint of will and rehabilitation exercise, Henri Sannier has regained the use of his legs. One night at the end of 2021, when he needed a drug, he got up alone from his medical bed and managed to travel without help the 3 meters that separated him from his caches. A great victory for this great asset. And others followed: the first steps in front of his grandchildren, the resumption of mountain bike walks or the driving license … “When you have a neuropathic disease, you lose your license automatically. I had to iron it and I succeeded. It was a great joy.”

If the former presenter was able to get out of his wheelchair, some everyday gestures are still limited because of the disease. “Many movements remain difficult, even impossible, because I no longer have enough dexterity in my hands. I can no longer put a button on my shirt, I can’t make my laces anymore. I can’t cut my meat for example. Morality: I become vegetarian”he has fun.

“I can sign and sign books, but I can’t write anymore. When you are a journalist, it’s very difficult not to be able to write. I miss it a lot.” However, Henri does not let his difficulties achieve his morale. “I have always had a lot of luck in my life”he assures.

Henri Sannier in front of the disease: “You always have to be positivating”

Positivity is also an essential weapon to overcome a disease, according to him. Never give up, being optimistic and benevolent towards others were his mantras throughout his care journey. It is also to share this philosophy and this message that he confided in his neuropathy in the book “The day I reappeared to walk” (Editions du Rocher). “Above all, you shouldn’t anchor yourself in your head that you have a rare disease and that you are not going to get out of it, he adds. Yes, I have a rare disease, but I wage war on a daily basis. “

“Faced with the disease, and in life in general. You always have to be positive. There is always something that is fine. For example, at the moment, I look at the sky, it is gray yes, but I also see that there is a little blue in the distance. I focus on that.”